Don't defer diagnosis

Have you put off going to the doctor because you are worried about the diagnosis or think you shouldn't bother others?   I have.  Have you ever said any of the following? I'd be surprised if you haven't:

"I'll leave it for now", "I'm sure it'll get better in time", "I'll get round to eventually", "yeah, but I have to... first". 

Here's a quick list I'd like you to read and consider carefully. Put aside your 'yeah but...' and put yourself first. 

1.    You are not 'wasting' the doctor's time with a symptom. However minor it might seem, if it is a marker for disease (eg blood in your urine or faeces, unusual persistent pain or anything else which you know is just not right for you), then tell your doctor and get an appointment. Insist if you have to.

2.    Attend all your scans and tests, no matter how uncomfortable or unpleasant. A scan or smear etc can detect something that you can't see or feel. You are not wasting time by attending these appointments, in fact you could be saving more than just time.

3.    Get on with it. It's very simple - the earlier something is diagnosed and can be treated, the more chance you have of living a longer, healthier life. And remember, early diagnosis may also mean you can sigh with relief that whatever has been bugging you is, in fact, something easily treatable.

4.    Have a regular 'feel'. A small lump could be something as simple as a cyst, and if it's anything else, the sooner it is attended to, the better.  You know which bits of you to check, I'm just reminding you to do it regularly.

5.    Getting a diagnosis can be scary, but it's also vitally important as early diagnosis has such an impact on the outcomes. 

6.    The shock of diagnosis (for you or a family member) can be huge. This is perhaps the hardest to get your head around, but is very important: take control - work with your clinicians, friends and family, with support groups and charities. Diagnosis is often a 'first step' in your journey, and everyone takes a different path. Your preferences and wishes should be listened to by all involved in your care. 

7.    Treatment can be challenging, but it may mean the difference between all your friends and family being there for your next birthday, or for your funeral. Treatments for different conditions are highly personalised these days so someone else's experience may not be a good compass for your journey. 

8.    It's OK to ask stupid questions. And it's OK to ask them more than once.

9.    You are not alone. You never know who else may understand what you are going through -  share (in the right way, with the right people, in a way that suits you). You will be amazed who comes out to support you.

I was prompted to write today not only because of my own experience, but because I read about a family who has had their child diagnosed with a life limiting condition. The diagnosis (which they did not delay) has shattered the family and they were frozen with fear. Nobody wants a diagnosis that casts such a shadow over their lives, it's out of human control, it's almost mind-bendingly difficult to assimilate. But others stepped in to seek help. In reaching out, their journey is no longer quite so desolate - there will now be someone there with them, with a lamp to help light the difficult path ahead.   

Useful links

• How do I check for cancer?

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• Four wounds and a bruise
• Attitude and examination

Photo courtesy of https://greatpeopleinside.com/dealing-with-procrastination/ 

Author's note: after my first draft of this post, I went through and took out all the 'don't' statements. It's too easy to list what not to do - I hope turning it into what we 'can' do reads better.

Update and a request

MRI Scanner (C) Southampton NHS

My scan came back as looking good, and so are my bloods, so I am starting chemo on 11 January, with my PICC line revised date now 8th Jan. At least I won't have the PICC over Christmas. But of course with all the changes in tiers, and the spread of this new variant of covid, I guess it's not guaranteed. What will be will be - the most important thing is to look forward and tackle each challenge as it arises.

The side-effects of the chemo are not great, especially the neuropathy and the feeling of coldness in the extremities and the throat (meaning that cold air can make you breathless). And the idea of a runny tummy with an ileostomy doesn't exactly thrill me either - but whatever comes, I will deal with. One more stage in getting rid of Gertrude and her offspring completely.

Of course this doesn't guarantee that it will never come back, but I will have regular scans, so we will be able to keep tabs and if something suspicious does arise, it will be spotted early on.

And that's the purpose of this blog post - not to worry about the New Year, treatment etc, but to ask each and every one of you if you would do the following:

• Listen to your body - if something doesn't feel right, get it checked.
• If you need help, or feel like things are too much - ask for help. You are strong but everyone needs a hand sometimes.
• Make sure you keep your scan appointments, and if you are due one and it hasn't turned up, then ask. Covid should not stop you getting checked; even if it can't be done immediately, make sure you are scheduled whether it's for a mammogram, smear or whatever. 
• Support your NHS by using common sense and avoiding contact as much as you can - it's something that is going to hurt this Christmas, but it's important for all of us. Those with cancer - diagnosed or not - may be especially vulnerable.
• Be kind. There is so much stress, so much sadness and loss - your kind word, gesture or deed could make the difference.

I have had a strange year to say the least - with Covid knocking my treatment schedule for six - but I'm here, and looking forward to 2021 and many more years too. I want to thank everyone for their support - from friends who I know well to those I am just 'social media' buddies with, to my family, the NHS who have been amazing, and my employers. 

I am not alone through everything I've been through and am going through, so my final comment is to thank my amazing partner, Sheena, for not only supporting me, but also helping my mother, who can be challenging sometimes!

Here's to 2021 - to the success of the vaccine, to common sense, and to kindness.

Useful links

• Cancer symptoms
• Samaritans
• NHS Talking Therapies
• MacMillan Cancer Support

Starting treatment

Yesterday I had my first radiotherapy treatment. It's early days, so it wasn't 'much', but side-effects usually come into play after seven to ten days, so watch this blog for an update on that!

The ceiling light in the radiotherapy
waiting room

I went to the hospital at 10am (after three changed times) to get my chemotherapy presecription talk (this is, after all, a toxic substance), my anti-sickness pills and my anti-poop pills. Oh, and I'm taking Senna - so this could get interesting!

After the meeting with the nurse I needed my bloods done (they will be done every week to monitor my immune system under chemo) and - after the results came back (clear, hooray), I went in for my first zap on the bench.

The radiotherapy machine is like a science fiction robot that is swinging round you, ready to dive in and ... well, it doesn't dive in, it just spins round slowly one way, then the other, gently bathing you in radiation. It makes a humming noise (nothing like CT or MRI), and the ambient music played is almost louder than the machine.

Today's visit was shorter, as most will be except for my weekly blood tests and some consultations in between. I have five weeks of this ahead of me.

The technology at play is amazing. They line the machine up to the three tattoos on my thighs and belly, and then do a 'test run'. They took longer examining the test run images today as my insides were different to yesterday. 'A little gas' said the nurse. And when I slipped off the table after treatment, said gas escaped. Oops.

I feel fine. I feel slightly 'weird' is all I can. It's probably more psychological than physical at this stage. I can still function and am volunteering for a local cancer support charity, and still gardening. I'm building a free standing raised bed tomorrow (the wood arrived today). I sort of feel I have to do the bigger jobs now, as I don't know how I will feel as time goes on. Hopefully I will continue to feel OK and can keep working on the garden - thanks to lockdown it's never looked so good.

Blasts from my past
In a field in Suffolk
Here come the pagans
In a pigeon hole

Useful links
Ipswich and Colchester Hospitals Charity
Cancer Research UK general cancer information

Empty tank

A CT scanner. 

Well the senna tablets worked! I had my mapping scan today and my insides were as desired (ie not full).  The quick scan said all was good, so it was time to set me up for the full scan. They inserted a canula in my right arm and ... OW! For some reason it was very painful. So they tried the left arm, and that was fine.

The marker fuild went in - it's a weird feeling, your hands go hot, it tingles as it goes into the vein, and it also makes you feel like you have let loose your bladder. You don't, but that's how it feels. Weird. I lay still, knees up, pants down, hands on my chest, and the machine buzzing around me.

The scan didn't take too long, but once the mapping had been done, I needed my tattoos. Three small black dots (in the centre of two felt pen lines crossed) - one on each hip, and one on my abdomen.

The new cold frame

The scan took shots of my insides at 2mm intervals - so the area they covered must have meant a lot of 'slices' of scan. Each one of those has to be looked at, and the treatment plan developed accordingly. Then it has to be signed off by the team (oncologist, radiologist, and maybe others), before my treatment can be booked.

In about two weeks time I will get notified when my treatment will start, and then I'll need to take the oral chemo as well as undergo the therapeutic radiotherapy. I can't say I'm looking forward to it, but I am looking forward to it starting so that the end will be nearer.

Still being positive, and whilst I have to wait, I am doing a lot of gardening and been building things out of wood.

Photo of CT Scanner (C) Cancer Research UK

Useful links
About CT Scans - from CRUK
Radiotherapy - from Bowel Cancer UK

More from my blog:
Crocs in the Fens
A proper gander
Food security

Too full

Yes, it really is me in here

I went for my planning scan at the hospital. This is where they map out where my tumour is, and line me up (including some marker tattoo dots) to make sure that the treatment hits the same spot every time.

But first they do a little scan just to make sure they can see everything. And they couldn't. I was 'too full'. So I did a little emptying and then returned to the scanner. Still too much.

I went into the booth and looked at my scan on screen. I could see my insides, my upper intestine and the lower gut. The 'dark matter' was the problem! The more matter in there, the wider they have to do the scan to make sure they hit the right area, and the wider the area, the more radiation contamination. So the smaller the area, the better. That meant they didn't want to do the scan this time round. It happens quite often, I was told. If I had known I would have perhaps eaten less the day before, but they don't want people to change eating habits. Instead I will have to make sure I am 'empty' before I go next time.

Last week when I saw the consultant he gave me immodium. This week the radiologist gave me senna. I am going to have an interesting few weeks, for sure!

My rescheduled scan is for next Wednesday. After then, hopefully, I'll know when I start radiotherapy.

I will have to watch my diet

Once I have completed my treatment, I will still have my tattoos - just small dots - but a permanent reminder. Sheena has her three tattoos from her radiotherapy too. We are both going to get one of our tattoo dots turned into a dragon tattoo. They'll be in different places, but when we look at them, we'll be reminded that we both went through hell, and came out smiling.

See also:

Scans

Treatment planning

Today we went to the hospital for my first proper consultation with the oncology team - in this case, radiotherapy.

I know that surgery is not an option at the moment, but the reassuring news is that the radiotherapy treatment regime would have been what happens first anyway, regardless of Covid-19.

We know the hospital well from Sheena's treatment last year - but it was so weird. The whole of the Wolverstone Ward area was empty - no chairs, no staff, the chemo ward itself closed and dark. We made our way through to radiotherapy - the last time we were there was when Sheena rung the bell. I hope to be doing that in due course too. The chemotherapy patients and others who need cancer treatment have been moved to a local private hospital.

Home made PPE 

Some of the staff wore PPE, some didn't. We took our own basic precautions - the face masks protect them, not us, which is just as important.

The Senior Registrar was very good at giving us time, and detail. He answered all our questions and explained things clearly. I saw the MRI scan of my insides - oops, that much fat?  I also saw my bladder, small intestine and - in the bowel - the denser shadow that is the tumour now known as Gertrude.

The initial plan is for five weeks of radiotherapy - Monday to Friday (I get weekends off, hooray). There will be some side effects, such as tiredness and possibly nausea, but from the sound of it nothing like the burning or pain that Sheena's radiotherapy caused. Different part of the body, different type of radiation I guess.

Along with the radiotherapy I will be taking a tablet form of chemotherapy. This will improve the result of the radiotherapy by10%. There may be side effects from this too, but if they get too bad, I can stop taking it.

After radiotherapy finishes, there will be a period of recovery. And then, if the national situation permits, I will be scheduled for surgery.

All in all it looks like I will be in for a pretty long haul of treatment and recovery, but I am optimistic. The outcome of this programme is 'cure'.

So, off to the hospital again on Thursday for the 'mapping scan', and perhaps some little marker tattoos, and then I hope to find out early next week when my radiotherapy will start.

Thank you for your support, encouragement and watch this space for more news on Gertrude and other things too.

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Little Lifts
Thesia
The City of Cats

Little lifts

Having cancer myself has, of course, sent both Sheena and I into a slightly more reflective frame of mind, especially when we think about the last 18 months. In October 2018, she was diagnosed with breast cancer and we went through a hell of a journey together. We have moved on so much - she is so much stronger and returning to her normal self. Her final treatment was in January, so it's still a recent memory, but we felt we were back on track.

We were to become very familiar with
the Wolverstone Ward (C) Ipswich Star

My recently diagnosed cancer is different and it will affect me in different ways. I'm very happy that there is no indication that I'll need chemotherapy (at the moment); I went to every one of Sheena's treatments, and although we tried to make them a positive experience, the physical, mental and long-term effects took a lot of getting over. For her, of course, but partially for me as observer too. Partners of loved ones going through chemo will know what I mean.

But I want to take you back to a moment that was pretty huge - when we first had the nature of Sheena's cancer confimred. We were taken into a family room, and sat down. A nurse entered, and left a bag by the vacant chair that faced us, and said she'd be right back. Sheena made a joke about seeing what was in it. In due course the nurse returned and told us the bad news, and also outlined what would happen next. This was so important for us - there was so much to take in, but the nurse was kind, patient and explained everything as clearly as she could.

(C) Little Lifts

At the end of the conversation, the nurse took the bag and gave it to Sheena. It was a box in a tote bag that said 'Little Lifts'. This was for Sheena, and provided by a local charity. The box contained many helpful items for someone who was going to have chemo - from an ice lolly mould (keeping the mouth cool helps), to little treats like chocolate and cordial. There was a soft plastic cutlery set (again for the sensitive mouth), and a number of other bits and pieces - all of which were a delight. Seemed odd to be getting a present for having cancer, but it did exactly what it said on the box, and gave Sheena a little lift at a difficult time.

I just wanted to take this opportunity to say thank you to Little Lifts, they made a difference then, and are still doing so now for others. Cancer hasn't stopped because of Covid-19. If you get a chance, donate to your local cancer charity (or Little Lifts if you can). Thank you.

Useful links:
Little Lifts
Ipswich and Colchester Hospitals Blossom Appeal
Breast Cancer information
Bowel Cancer information

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Attitude and examination
Missing people

In other news...

The plan for my treatment was originally indicated as surgery. But I spoke to my consultant today, and he has put me forward for radiotherapy.

Normally I'm sure surgery would have been the first step, but as there's a 5% chance of 'leakage' when they stitch your tubes back together, and that would mean a move to ICU, for now that kind of surgery is not first choice. I don't think I'm getting 'second choice' treatment though - my consultant has looked at my scans and decided on a treatment plan that will offer me the best treatment at the current time.

If in future I need surgery, so be it, but I am not too concerned. Although radiotherapy will have some effects, not the least of which will be making me tired, I am likely to recover much quicker than if I had surgery. So, apart from having a ray gun up my backside, things are looking OK.

Photo (C) Clkr.com

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Day 21 in the jungle
Under the knife
Kiss away time

Going on holiday

So Sheena and I have been in lockdown for several weeks.
We decided to take a break...


 After our first attempt to get away, we had to try again.



Watch this space for future updates, including 'Postcards from the caravan'.

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Chipmink Madness (one of my songs) - Youtube
Three strikes
Situational Awareness

Videographer: Sheena Stebbing

Day 21 in the jungle

Well, maybe not day 21, and maybe not a jungle, but sometimes the posts and messages you read on social media make you feel like people out there are in dire straits. As in - they only have enough loo roll to last 17 months, or enough pasta to feed all of the Czech Republic.

I'm not being nasty, it's evident from food and produce shortages that panic buying has impacted the supply chain, and the result will be  they'll have loads of products going past their sell by date.

Wood from the fallen ash

My partner and I are self-isolating - we are both at risk for different reasons. Luckily for us at the moment this is not a problem - we live in a forest and our neighbour is away, so all we see are walkers with dogs passing by and the diligent forestry workers - cutting and transporting the pine (to make into toilet paper perhaps!).

I've hardly been out apart from walks when all the walkers have gone, but we are so lucky that we have a beautiful garden to occupy ourselves, and the biggest pile of wood to chop and stack ready for next winter.

We had plenty of food in stock, and we've  had a delivery from Sheena's son (yes, we'are all sanitised and cleansed from his 2m visit now), so we are pretty well set for a while if needed.

I built another wood store

I am still working from home - work has not stopped and in fact now more than ever we need help; our amazing NHS still rely on the air ambulance services around the country to help save lives every day, we can't put heart attacks and falls and crashes on hold because of Covid-19. I am very proud to be a fundraiser, and very lucky that I can do my job from the middle of a forest.

My main concern is that my upcoming cancer treatment may be delayed - and who knows by how long. Although I'm not overly worried at the moment, the thought of even going to hospital, where the beleagued NHS are struggling to keep themselves and their patients safe, is a little disconcerting.

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Fear
Nature's gift
East Anglian Air Ambulance

Photos (C) Carolyn Sheppard / Sheena Stebbing

Under the knife

This may be a greusome thought, but I'm actually really pleased to know that I have an operation coming up. Having seen Sheena go through chemotherapy, radiotherapy (the burns were so much worse than we had anticipated), and surgery, I know I'm getting off lightly. Well, as far as I know, that's all I'll need.

The cancer has not spread, the scans show no problems with my major organs. If bowel cancer spreads, it usually goes to lungs or liver, and they are confident I've no problems there.

The margins of the cancer are clear too, so the removal of it in my tubes should be relatively straightforward as well. This all bodes well for an excellent outcome!

But, of course, we are amid the most extraordinary healthcare crisis this planet has seen since the 1918 Spanish Flu epidemic, or even since the plague. Well, cancer surgery is going ahead but less urgent surgery (such as the plan for fixing my dodgy finger joints) are being cancelled.  They are also cancelling gall stone surgery - which I am sorry to hear. I remember that was so very painful!

So all in all, a good news day for me today. Next week I should get an appointment with my consultant, and then schedule in the surgery. After surgery at least six weeks off work, and probably six months before I'll be weilding the chainsaw in anger again, but I think that's a small price to pay.

Reminder - if you have unusual bowel symptoms, please get them checked. Don't wait until it may be too late. Your health matters. You matter. Take care.

Photo (C) The Simpsons / Matt Groenig

Useful links
Symptoms of bowel cancer
CRUK - about cancer
Ipswich Hospital Blossom Appeal

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Learning new skills
Ghost Stories
Adelong Morning

Scans

Fashionistah - not!

A Friday night - what better way to spend it than in the Radiography Department of Ipswich Hopsital.

My first scan was the MRI - this will determine what Gertrude is made of and how embedded she is in my gut. The MRI machine was quite comfortable but loud, as expected. I had headphones but not music - so I made music myself.

There were different scans, and different scans made different noises:

The 'underwater hurdy gurdy' - a repetitive thrum on a single note, I made up tunes that leapt around the base note.

The 'sewing machine' - a higher less musical note, a lot faster. I imagined a room full of sewing machines.

The 'food mixer' - this one shook the bed and was a lot lower in tone - I imagined myself being spun round as part of a very lumpy pesto.

Back again to a higher note, and slightly out of tune 'amateur hurdy hurdy' and I made up some more tunes. What a shame I'll never remember them!

I think some of my imaginative interpretations of the sounds may have been down to the intravenous Buscopan, which was rather relaxing. All in all I was in the scanner for around half and hour.

Still gowned up (ain't it a great look?) I was taken down to the CT scanner, and and IV drip put in. The scans were a lot quicker (and a lot quieter) but when they released the liquid in the IV into my veins (so that they are easier to see on the scan), it gave a weird sensation of a warmth all over and - that of having released fluid unintentionally (I hadn't, but they did warn me it would feel like this).

The CT scan will show whether Gertrude has any sisters anywhere else. I'm seriously hoping she's an only child.

So after the scans we headed back home (via the chip shop), and now I have to wait. I am hoping for an appointment soon so we know what happens next and can plan.

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So long and thanks for all the...
The people who went before

Useful links:

Bowel Cancer UK
Colchester and Ipswich Hospitals Charity

The results are in

Well, we already knew, but the histopathology results have confirmed the cancer in my bowel. Nasty little thing, I shall call it ‘Gertrude’.

Gertrude was found about 15cm into my insides (from the arse end), which is a good thing position wise. It is far in enough for surgery (which is a given) to be able to snip and stitch – so Gertrude and surrounding tissue will be excised, and the two ends of my innards reattached – a slightly shorter run than before.

I had my colonoscopy last week (this is when I met Gertrude – on screen) and the procedure itself

Preparing for colonoscopy

was not much of a drama. The night before (those of you who have had this will know) was worse! So, having established that there was a cancer in my bowel, the colonoscopy nurse took some samples, whose results were what we went to discuss at the hospital today.

I don’t know the stage or the grade of Gertrude yet. We don’t know if it’s aggressive, or easily intimidated, and we don’t know if it has spread at all. These options will be determined by:

• CT scan to see if the cancer has spread anywhere
• MRI scan to get a more detailed idea of where Gertrude is and which parts of my innards it has attached to (wall, nodes etc)
• Surgery to remove Gertrude and stitch my pipes back together
• Dissection – once Gertrude is surgically removed, it will go back for further pathology investigation.

The important thing now for me is the timeline, which is something on the lines of the scans (not on the same day) within the next two weeks or so, then the earliest surgical appointment that can be had. Possibly up to another month after the scans, if I’m lucky, earlier.

The reports on the deported Gertrude will determine whether I need any other treatment. Radiotherapy is unlikely due to the location, but chemotherapy is a possibility. It totally depends on what they find with the scans and post-surgery.

With any luck I could be having my operation sometime in April or May, and then it will be recovery time. Even if I have the surgery laparoscopically (keyhole) it’s a pretty big rework of the old insides, so I will need quite a bit of recuperation time.

I’m being positive and upbeat because that’s the best way to knock Gertrude into submission. Cancer is an ugly, unwanted intruder, but needs to be treated with care so it doesn’t cause more problems. Gertrude is an inconvenience that will make my life pretty difficult for several months, but I am aiming for the minimal impact scenario where I will be up and about and my usual self in time to enjoy the summer months.

Meanwhile there is nothing I can or need to do other than keep healthy and carry on. I will post further updates as and when things happen/change.

Finally, Gertrude doesn’t have a chance, because there is so much love and support around me. Thank you.

I've said it now

Sunday 26 January 2020

If I can write every day – even just a few paragraphs, then I’ll be making progress. I haven’t written properly for a long time, and there are lots of reasons of course, but all of them are just excuses. I love to write, and by not writing I have let a little piece of me deteriorate. Same with song-writing – not just the lyrics, but the music too.

I got stuck in a rut for a while, I have to admit. But my life has changed so much in the last two years – I’m out of that rut, and now I’m looking around at the new horizons. I have not changed my life so much that everything is different, but I can most certainly spend time now doing more writing, and – if I can motivate myself to do so – playing more music.

Last year was untypical to say the least with my partner’s cancer treatment pretty much occupying the whole year in various ways. I did write a bit about our experiences, but it was a different kind of writing – writing to share something intimate and challenging, and to share to help others as well as ourselves.

A blog without a photo is boring.
This is my favourite pine tree.

Cancer treatment has finished, and hopefully Sheena will continue to get stronger and better now that the cancer has gone. But the side effects of the treatments (which only stopped this month) need some recovery time too.

Back to the start of this – that I want to write every day. Writing is like any muscle, you need to use it to keep it strong and flexible. So, I’m limbering up – getting ready to launch back into exercising my writing brain beyond the daily use demanded by work, or the occasional blog.

My plan is to write a novel. Oh yes, everyone has a novel in them we know, but do I have a story, and a loose plot, I just need to work on characterisations, structure and then simply sit down and write. It doesn’t matter if what I write isn’t good enough – it matters only that I write. The more I do so, the more I will improve. I will also ask for critique from those whose opinions I value, sure of their honesty.

If you have a goal you want to achieve, what do you do to pursue it? In a recent training course (which has prompted me to do this), one of the recommendations was ‘affirmations’ – saying out loud to yourself what it is you want to achieve. One colleague put it really simply, “I’ve said it, so I’ll do it”.  I like that.

Hence this rather boring, but important to me, blog. I have said it. I will do it.

Other blog posts related to writing:

Thesisa

Troublesome angels

Time management

Postscript - having looked for a photo to illustrate this post, I think I just might write something about that tree next.

(C) Carolyn Sheppard

So long, and thanks for all the...

STM at Cambridge Junction, 2020

Cropredy, 1994

Well, not fish, for sure! Saturday 18th January 2020 did, however, bring an end to something that was a big part of my life. From 1988 to around 2010, I was part of a band called Shave the Monkey that played folk clubs around the UK and folk festivals in the UK and mainland Europe. We had some amazing times, including playing at Fairport Convention's Cropredy festival (to something like 17,000 people), Cambridge Folk Festival, Dranouter in Belgium and Skagen Festival in Denmark.  We appeared on BBC and ITV and on lots of radio stations.

I don't think I can explain the feeling of being on stage, with five other musicians all working together to enterain, and so many people listening, enjoying and participating in your music. There's nothing quite like it.

I'm a songwriter mostly, but the band was probably 2/3 instrumental, 1/3 songs. It wasn't just me that sang, Steve also wrote (writes) songs and we did a few of his songs and tunes in our sets and on our CDs. I still sing, I still play, but arthritis in the hands is a bugger for a guitarist!

Here's me singing our 'hit' The Witchfinder General for the very last time:

The band broke up (so did the marriage of two of the members), and we played a couple of  reunion gigs (I think in 2012 - but happy to be corrected). That was weird, because I was in a very difficult place. The husband's girlfriend was in the audience, there were musical tensions, lots of emotions, and it wasn't easy with the new relationship dimensions. I don't think I did my best, but I certainly tried - the audience (and their reaction) are always the most important thing when performing; you have to give it your best. Which reminds me...

A very long time ago

I remember one time we played the Rupert Bear Appreciation Society Annual Conference. Yes, such a thing exists (and lots of them did wear check trousers/scarves and red jumpers), and we were their evening entertainment. This was about 2000, and I know because I was in the depth of depression at the time. I remember laying on the car roof before the gig, looking at the sky and wondering why I was alive.

But I also remember going on stage and playing - and seeing the Ruperts dance, hearing them clap, and even sing along with a number or two. And that was always a good way to banish the black dog.

There was another time we played the Pagan Federation's annual conference in London.  I wasn't black dogged then, thankfully, but it was a strange gig. I remember a few things - such as my bum being too hot as a massive stage light was directly behind me, a small child leaping on my lap and giving me a 'pagan kiss' because he liked our music so much, and a large man in a pink fairy costume. I have to say they were a great audience, and I went back and played again with a musical duo n later iyears.

I could reminisce for ages - good times and bad - gigs with five people, gigs with five thousand, but the important thing is closure. I had said I wasn't intrerested in any more reunions, but with the 'last ever' on the cards, I was happy to contribute a couple of songs and a tune. The audience at the Cambridge Junction was filled with faces we knew from times past, as well as current friends and family. We couldn't have played to a friendlier, warmer, more receptive audience. Perfect for a last gig.

From our very first gig to our very last, it's the audiences that have always made it worthwhile. So though I (and others of course) will continue to play music, Shave the Monkey has finally hung up the razor and is going to let the fur grow.  So long, and thanks to all our amazing audiences for listening, buying CDs, talking to us, telling us what you liked, and for being there at every single gig we ever played.

Mic drop...

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Promo video from 1998 (above)
Broken Rock (song)
Music, music (blog)
Mermaid's Tears (song)
Two performances (blog)

(C) Carolyn Sheppard, and Shave the Monkey. Photos from various sources.

Fundraisers are human too

The cause is what counts

A while back a major giving fundraiser told me that one of his contacts had passed away. There was real grief in his voice and he said ‘I think I spent more time with him than some of my best friends’ – said in humour but a touch of truth there.  Building relationships is not just about ‘eyes on the prize’ for fundraisers, it’s about making a human connection.

The bereaved partner knew that it was more than just ‘money hunting’ and kindly phoned him directly when her husband died, and invited him to the funeral.

Remember, fundraisers are human too. We really do care about the people we meet and work with who support our work, not just the beneficiaries.

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Account overdue

Expect to pay for the packaging

Photo (C) Carolyn Sheppard

How life changes

These will be cheeseboards

Apart from the things I have learned because of Sheena's cancer (see 'new skills'), I thought it might be an idea to add some of the other things I've learned/experienced over the past 18 months.  Why share this? Because I think it demonstrates that you are never too old to learn, and it's never too late to end up doing things you always thought you might enjoy, but haven't had the opportunity (or even bravery) to try.

1. Using a chain saw

Using a chain saw is a dangerous thing!  Well of course, but crossing the road and drinking vodka are dangerous things too, so it's a matter of perspective.  Like any power tool, knowing how to use it, using it properly and taking the right safety precautions are sensible steps.  Over-confidence is the danger zone!  I mostly use a small electric chain saw for cutting logs.  It's not too heavy, not too powerful, but it chops up logs and pallets quickly and with so much less effort.

2. Using an axe and a log splitter

Table decoration to be

I may have weilded an axe in the past, but not with such purpose before. Those logs needed chopping and splitting - our log burner is hungry in the winter and it's darn cold in the woods sometimes.  The axe is great for some woods, but for the stubborn ones the log splitter - a sort of hammer-shaped axe, is king. Whack! And (if you hit it right) the log cleaves in two.  It depends on the wood of course, but sycamore is like butter - so easy to split. It will need plenty of time to season though before we can burn it.

3. Using power sanders

OK, a basic DIY tool, but I never used one before. Now I've sanded about 200 ends of wood for my
daughter's wedding table decorations, and used the bench sander (oh, what a lovely machine!) too.  Making the cheeseboards out of large sycamore slices that had been chopped with the chainsaw is the hardest though - takes three lots of sanding (and next stage is applying the mineral oil) to get the right finish.

 Axle trying out the unfinished log store

4. A passion for pallets

I've discovered how much fun pallets can be - not only for providing some great kindling (using chain saw, then small machete), but also making things. So I can now build wood stores - made two so far.  Next project is a cover for the other wood stores we already have. Yes, we use a lot of wood.

5. Living in the woods

Of course this has been an absolute delight, with woodpeckers, marsh tits and siskin gracing our bird feeder along with the usual suspects. Oh, and some very destructive squirrels too.  Living in a house in the woods is just amazing, even when it rains or snows. The ever changing colours, sounds and smells mean every day is different.

6. Being a grandma

Chizel

Well this deserves more than one post, and more than just a mention, but any grandparent out there will know exactly why this was one of the most fantastic things that happened recently. Being a grandma required no effort or bravery from me, admittedly, but I am sure it will be keeping me busy over the coming years.

7. Mowing the lawn

A ride-on tractor mower, which is amazing fun.  The lawn is large, and I have to check it for doggy 'land mines' before mowing, or ...

8. Dog agility

I'm terrible at it, and I confuse the poor dog who is a veteran of agility displays, but I do enjoy it when I get the chance to run him.  Next year I will be commentating at shows, that's going to be fun
too.

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A typical English village
Georgia on my mind

Photos (C) Carolyn Sheppard

Magic words

Not abracadabra or open sesame, but 'cancer free'.  When we went to the hospital on Tuesday, those magic words were spoken.

It's not over yet though - we've won the main battle, but the war is not over. Chemotherapy and surgery have removed all traces of cancer from Sheena - but we still have to make sure it doesn't come back. So radiotherapy and herceptin injections still ahead.  It will take us up to the anniversary of when she was first diagnosed.

As we sat in the office with the consultant radiologist, we heard the bell ring and a round of applause. Someone in the clinic had finished their treatment and were celebrating.  We are a way from this still, but the anticipation of ringing that bell, and the feeling you get when you hear it, is wonderful. 

Sheena's hair is starting to grow back, and she is slowly beginning to feel more herself again. We know it will knock her back again when radiotherapy starts and the tiredness and other potential side effects kick in, but for now we are enjoying that precious moment knowing that the treatment so far has worked, and worked well.

Our admiration and respect for the NHS staff is unbounded - our determination to see this through to the end and celebrate in style is unlimited.

It seems like cancer has been the subject of all my blogs recently, but it does kind of impinge on all areas of your life.  More blogs, with different subjects, will follow.  But in the meantime I am going to ask you all once again:

Have those scans/tests that you need
Check yourself regularly
Don't ignore any symptoms that you don't understand

Links:
Check your breasts
Breast cancer in men
Ipswich Blossom Appeal

Coming soon...

Where I live, I love. Life in the woods.
My amazing grandson. Of course, he's the most perfect child in the world.
My amazing daughter and her wedding.  It will be beautiful and perfect.
Our amazing holidays - oh soon please!

Attitude and examination

Every third Wednesday we go out for the day. We drink tea, eat biscuits, have lunch, play board games and often laugh quite a bit.  We meet some lovely people and chat about all sorts of things. 

A pleasant outdoor area at the hospital

And during all of this, Sheena is having her chemotherapy.  The side-effects vary, and sometimes the treatments for the side-effects have side-effects, but as you can imagine it is not a pleasant process.

But we make the best of it. I’m not having chemo – this poison is not being pumped into my blood – but we share the experience to an extent. I always go with her.  Some folks turn up and sit for the day on their own, no one to accompany them during their treatment.  We often share our stash of sweets, I offer to make tea, or just chat. Some folks just sleep, some leave with huge smiles, knowing it is their last day of treatment. Some wander past as they are shown round and are fearful of the unknown. We were like that just a few months ago. And then it becomes normal.

Attitude is key. I cannot express enough how Sheena’s positive attitude makes the day - and the treatment - bearable. For her it is the start of feeling really bad for two weeks and feeling fine again just in time for the next treatment and a repeat of the whole cycle again. For me it is seeing what effects the chemo has on her, and how it changes our lives – for now.  Even at her lowest, she can see through to the future and to when this is all over.

The good news is that there are just two more left – one next week and then one in April. After that there are other treatment regimes to come but reaching the end of chemotherapy is a most welcome destination that is now almost in sight.   

The staff at the hospital are amazing. Their positivity and kindness – the nurses and the support staff – goes a long way. 

At the start of her treatment Sheena posted on social media about her condition and what lay ahead. She also encouraged friends to do those self-examinations that so often can lead to a diagnosis that enables life-saving treatment. To my knowledge, at least three people ended up needing to be referred due to something that they found. Her willingness to share and be open about her cancer has probably saved more lives.  Cancer Research UK say one in two of us will experience cancer, so please give yourself the best chance you can. Do the self-exams, go to your screening appointments, and if you have any worrying symptoms go see your doctor.

Links

·        Ipswich Hospital Blossom Appeal

·        Breast cancer care

·        CRUK cancer checks

·        Prostate cancer

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·        Learning new skills

·        Too busy to blog

·        First Aid

Photo: Carolyn Sheppard

Learning new skills

I’ve chosen that title because it is one of the things that has happened since my partner Sheena was diagnosed with breast cancer in 2018.  She went for her regular mammogram on 28 October – by 28 November she was receiving her first chemotherapy treatment.

The NHS moved quickly and efficiently and have been brilliant all the way along so far. We are at treatment two and the third will be in a couple of weeks.  I use ‘we’ because that’s how it feels, we are going through this together, but it’s a hell of a lot easier for me than for her.

Sheena and I only met in February 2018, so this has been quite a test I guess, but maybe that’s what February was for (see ‘The Gift of Snow'), making sure we were both up for what lay ahead! 

There has been a whole range of emotions, but both of us feel amazingly confident – we know this is curable and have complete faith that this time next year we will be celebrating. 

From long hair to....

In the meantime, we know we have a very tough year ahead – with the first stage (hair loss) happening as predicted (Sheena couldn’t wear a cold cap, it gave her a headache), I learned my first new skill – hair cutting!  Admittedly the job I did would not provide me with suitable credentials for a career change, but (beyond using a head razor in the past) it was my first attempt at a haircut.  

Watching the chemo go in – and it takes about an hour – is a difficult process. The first time I noted that two of the syringes looked like they were full of Vimto (her favourite tipple), and she talked non-stop to our lovely nurse.

Before the second chemo, Sheena's white blood cells were down and her immune system not at ‘ideal’ for chemo – but given that her cancer is a nasty little bugger, it was deemed that chemo should go ahead but with additional support.  The extra help was a series of injections for five days following the chemo.  This time we played Scrabble as the chemo went it, with some help from the nurse of course.

Sheena is an ex-auxiliary nurse herself and has given more injections than I’ve had Chinese takeaways, but day one she did not do a great job on herself, with some of the medicine flying in the air.  The syringes are easy to use and have a fantastic self-retracting needle, but you still have to poke them into yourself. Day two she stabbed herself like she was throwing for 120 in a darts final!  That was enough – my turn to take over. Oh dear, I’m not a lover of needles to say the least.   A paramedic friend showed me how to do the injection and I had a turn – not great but an improvement on days one and two.  I finished the course for her, injecting Sheena (reasonably painlessly) and I am now confident that, should it be needed again, I can do it.  A new skill I never thought I’d acquire.

We both have a very positive attitude towards this horrible disease and know that we can beat it together.   The moral of the story is please do not miss out on any of your regular scans, screenings or check ups.  The earlier any cancer or other disease is detected, the better are your chances of recovery.

Happy New Year.

Liked this?  Try…

The Gift of Snow

From Heartening to Heartbreak

First Aid

Baptism (of fire)

Links

Ipswich Hospital Blossom Appeal
Breast Cancer Care